Saturday, August 30, 2008

Food Nazi

Over the past several months there have been times when I have not been able to do even the few things that remain my family responsibilities. One of my remaining jobs is ordering the groceries on-line at Harris Teeter where my husband then goes and picks up the filled order at a designated time.

During the weeks I was unable to fulfill this responsibility, I noticed that the house was suddenly filled with previously forbidden foods, mostly "sugar cereals." There were Apple Jacks and Fruity Pebbles, Froot Loops and Corn Pops. I finally felt compelled to raise the issue with issue with Bill.

My mother calls me the Food Nazi because she thinks I am too strict with the kids about what they can eat. I admit that I have issues with food. I prefer for the kids to eat the least processed foods possible; I'd rather make the cookies, cakes, and pies myself than buy them. That way I know what it is them. And I do believe the best philosophy is "All things in moderation." But my definition "moderation" does not translate into daily consumption. Sweet cereals are fine as a treat when my parents want to spoil them but every day is too much.

The sugar content bothers me but what really troubles me is the colors. In nature bright blue means, "Don't touch." Bright blue makes me think of poison tree frogs. Of course one could argue that mangoes, apples, and banana are colorful but they aren't neon, and they don't turn your poop different colors (although when I fed Amelia blueberries as a baby it looked like she had pooped a smurf). So I'll admit my reasoning is not fool-proof.

I asked Bill not to buy the cereals, which I realize is especially difficult if he gets stuck dragging the kids along to the store with him. So I renewed my vow to order the groceries once a week. Yesterday I called Bill at work to make sure I had everything on the list. He reminded me to get cereal. What do you want? "I want Honey Nut Cheerios and the kids want sweet cereals," he replied. "Hadn't we just talked about this," I thought, "Bill, they cannot eat sweet cereal every day. I'm not ordering them." I longed for the day when I had the strength to make Aidan's oatmeal from scratch every morning and felt like he was eating a really healthy breakfast.

I can just imagine the dramatic transformation that will occur in my pantry when I am longer around to piss and moan about Bill's purchases. But as long as I still have the strength to do so, I will try to continue my reign as the Food Nazi.

Friday, August 29, 2008

"Love You and Miss You, Mommy"

I spent my morning finishing the birthday cards that will accompany the children's future birthday gifts. I bought each child a birthday gift for every birthday between now and age 18 plus a gift for their high school graduation. I stopped it there because I had to stop somewhere and 18 seemed like a natural endpoint. I still have two more gifts to wrap for Amelia, my watch and my diamond earrings. I was waiting on those in case I wanted to wear them again but I don't really need them and I'd rather have them ready just in case I get blindsided by death sooner than I expect. I have one more gift to buy for each of them and this heartbreaking task will be done.

It was hard to write the cards. As I got further away from the present I realized I was writing to people I did not know, people I would never know. I can imagine the teenagers and the adults that they might become. I can see Amelia as a mother with at least three kids who works part-time as a vet or a pediatrician. That's her current plan and I can see that in her now as a nine year old.

Aidan is a bit more of a puzzle. When I watch him build with his legos, it's hard not to imagine him as an engineer or architect. In his first grade class, the students were supposed to draw a picture of themselves in their future career. Aidan drew himself and wrote, "I don't know what I want to be when I grow up." And surrounded the figure with question marks. I think it's healthy that he is keeping his options open. And like most boys his age, he never indulges fantasies about being a husband or father. Though I suspect that someday he will be one rough-and-tumble dad.

I know the career ambitions of children morph a lot along the way. My first plan was to be a cookie. Seriously, if you asked me as a toddler what I want to be when I grew up I answered, "A cookie." I guess at some point I realized that was not an option. I remember wanting to be a special education teacher for a long time because I wanted to work with children with Down's syndrome. After I started doing community theater I wanted to be an actress but my dad made it clear that he would not pay for any college education involving a theater arts degree. I don't know why I picked nursing. It was safe, easy to get a job, practical. The problem was I hated it as my college major. I swtiched to an undeclared major for a semester and discovered economics but when I looked in the help wanted ads, there were no positions for economists. My working class view of the word got the better of me and I went back to nursing. I finished my degree and became a pediatric nurse.

My initial instincts were correct: I didn't like being a nurse. I didn't mind the patients or the families, but I hated the way many doctors assumed I lacked intelligence and was beneath them. Few recognized that the nurses often knew far more about the patients than the doctors did. I lasted two years, during which I also received my Masters in Public Health. From there I started my doctorate in Health Policy and Administration and, there, I finally found something I really enjoyed. I liked the research and teaching aspects and found the field fascinating. So, in a very round about way, I found a career that was perfect for me.

So. knowing all this, I suspect my own children may end up far from where they intend to be at the outset. Of course they may be like Bill, who has always wanted to be a doctor. In fact, he won a state science competition with his work on antibiotic resistance when he was in high school. He apparently took the direct train to his infectious disease specialty.

As I wrote the cards, I tried to think back to myself at different ages of my life and came to the conclusion that I have always been, more or less, the same person. There were years when I was a little more withdrawn and self-conscious but they were few. For the most part I have always been outgoing, friendly, honest to a fault, talkative, introspective, stubborn, and bookish. I think I have changed very little; I have merely grown older and, hopefully, wiser.

But I know it doesn't always work this way. Sometimes people change drastically. And I cannot help but wonder what an early curve ball -- like losing your mother at a tender age -- can do to someone's psyche. So I have no idea to whom I am writing: my happy go luck girl and my willful, sensitive son or two people who do not yet exist.

I wrote the cards out, explaining the gifts. Some, like a set of Encyclopedia Brown books, needed only the simple explanation of how I loved them as a kid and always wanted to figure it the solution before the mystery was revealed. But others, like watches, had a double layer of meaning. Yes, they were nice timepieces but they were also reminders of the precious nature of each moment and the finiteness of our lives. I encouraged them both to use their time wisely at jobs they loved and with people they cherished. In some cards I wondered aloud about what they were doing, "I wonder if you still play soccer? Do you still do gymnastics?" I told them I hoped they were enjoying middle school and high school. I told them I hoped they were happy but that when they were unhappy they should remember that it does not last forever. Happiness always returns, but sometimes it runs like the Italian train system, a little behind schedule.

I didn't want the cards to be sad, but in a few I told them I wished I were there to stroke their cheeks and hug them again. And I assured them that I am always with them. I signed each card, "Love you and miss you, Mommy."

I hope the gifts are the right thing to do. I picture them blowing out the candles on their cakes over the years surrounded by their friends, happy and laughing. Part of me fears that going to their little nest to pull out "Mom's gift" will actually ruin an otherwise happy day. I hope that opening them each year will not feel like ripping the scab off a fresh wound causing it to bleed again. I don't want the gifts to pull them down; I just want them to know how much I loved them and how much I wanted to be there on the day that commerorates their entry into this world.

I'll have to be sure to let them know that the choice to open the gift is theirs. They needn't feel obligated if it hurts too much. The gifts are there, whenever they need a little reminder of me to hold in their hands or whenever they need to read my script across white card stock. It doesn't have to be on their birthday if that would ruin it for them. Perhaps they never have to open the gifts if it hurts too much. Because I don't want to make their grief last any longer than necessary. I just want to still be with them someway, somehow after I'm gone. And maybe that is selfish of me ... maybe I need to let them go without trying so hard to stay behind.

Thursday, August 28, 2008

My Broken Heart

So I mentioned last week that I had an echo and everything looked "normal." As it turns out that is not the case. Bill has a friend who is a very smart pediatric cardiologist, the kind of doctor who actually thinks which is unfortunately rare. After the echo, Bill and I were confuse. If the echo is normal why do I feel so badly and why has my heart rate increased so much over the past several months. That along with some other symptoms and occurances -- the severity of the embolism episode, a history of fainting spells, and the fact that I can breathe more easily when I squat -- made us wonder if I had a common congenital defect that no one had picked up on a previous study. The defect is called a patent foramen ovale (PFO) and about 25% of the population has one to no ill effect.

So today I was the oldest patient at the Duke Children's Hospital. All those health services researchers out there using claims data, not all those "out of range" values on your data are errors! I had another echocardiogram done but this time they injected "agitated saline." They watched the bubbles on the echo to see if they pass from the right atrium to the left atrium. I had some pass and they passed late so the idea of a PFO is less likely. The cardiologist did say he is still suspicious that it is there but the amount of shunting from right to left, if it is there, was small.

But the echo was not normal. In fact there are several changes from the last two echos that suggests that there is an actual cardiac problem rather than my heart compensating for my crappy lungs. My heart rate has increased a great deal, the electrical rhythm of the heart has changed and there is evidence that my heart is not able to fill adequately. It is unclear whether the sac around the heart has tightened and needs to be removed or if their is a problem with the heart elasticity. I must say it was impressive to listen to the cardiologist think aloud. It's rare that I meet a really smart doctor, one who knocks my socks off, but this one did just that.

I don't know whether to be happy or scared. I'm going to need another cardiac catheterization, but this time it's the full deal left and right sides of the heart. Depending on what that shows, I may also need an MRI before we can figure all this out. So I am back in panic mode.

Wednesday, August 27, 2008

A Life in Books

Those of you who read Newsweek may have noticed their "A Life in Books" column where they ask some luminary to list their five most important books. Last week they interviewed Jonathan Kozol. Forgive my ignorance Mr. Kozol, but I have no idea who you are. The brief bio described him as an activist and a National Book Award winner. So I decided that I have not read enough classics and that I would start with Mr. Kozol's list. The first was Faulkner's "The Sound and the Fury." I usually give a book 50 pages to grab me and, if it fails to do so at that point, I give it up. I lasted 20 pages with "The Sound and the Fury." Maybe it gets better but I figure life is, literally, too short to trudge through an unenjoyable book.

The second book he listed was "The Power and the Glory" by Graham Greene. Bill accompanied me to the library last week and I discovered that they did not possess this particular book. By some luck they did have "The End of the Affair," which I thought an acceptable substitute given that Greene authored it. I am enjoying it thoroughly. I do find myself speaking in a rather peculiar manner these days and I have been craving afternoon tea and scones.

So I haven't gotten to the other three books on the list yet ("The Souls of Black Folks" (DuBois), "The Bothers Karamazov" (Dostoyevsky), and "Collected Poems" (Yeats) ). Yesterday I started to think about what my own list would include. So here it is.

1. The Prophet (Kahlil Gibran) : To my mind, the sagest book ever written. I return to it time and again and find peace there. It is my Bible.
2. Animal Dreams (Barabara Kingsolver): This was the first book I read as an adult in which I felt overwhelmed by the emotional depth and intellect of a female writer.
3. Why Bad Things Happen to Good People (Harold S. Kushner): My friend Angela bought this book for me when my house burnt down. More so than any other book or person, it helped me to reconcile my hope for a benevolent God with the realities of the human condition. I found and continue to find the idea of an impotent God (or at least not omnipotent) comforting in some perverse way. It allows me to believe that there is a benevolent force that exists to love and comfort me even if it cannot take away my suffering.
4. The Red Tent: A thoroughly enjoyable work of fiction that embraces all that is wonderful about women and the profound relationships among women. Any book that can make you understand the upside of polygamy (in ancient times) is worth a read.
5. Bird by Bird (Anne LaMott): Bill always indulges my fantasies. When I was in graduate school and harbored a secret desire to be a caterer, he bought me a book on catering. When I got into photography, it bought me books on photography. When I started writing, he bought me LaMott. The premise, that we all have a story and that any on who writes is a writer regardless of whether or not they get published, inspires me every day. I am indebted to LaMott for giving me the courage to think of myself as a writer.

Honorable Mention
6. Interpreter of Maladies (Jhumpa Lahiri): An amazing collection of short stories. Her fiction is so incredibly real.

So what's your top 5? I'd love to hear them. I am always looking for a good read -- now more than ever.

Tuesday, August 26, 2008

Dirty Little Secret

It's hard to admit to the feelings I share in this post, but I think many mothers have these feelings sooner or later. As I tell my children, "I am your mother, but just like you I am a human being with my own feelings and flaws." I think we mothers sometimes forget that we are not superhuman.

When Aidan was half way to his third birthday, he committed a minor infraction that earned him some alone time in his room. He refused his sentence and, as I carried him up the stairs to enforce it, he pulled my hair so hard that he gave me a subgaleal hematoma. For six weeks after the incident, I had swelling over most of my scalp and sharp pains that radiated down my left arm. To this day, the skin on the while left side of my head is extremely sensitive. In the days immediately following the incident, I was very angry with him. But I knew that he had no way of understanding the potential consequences of his actions and he was very sorry for what he had done. So, I obviously forgave the little guy and moved on.

Unbeknownst to me at that time, this incident was the first in a long string of Aidan’s attempts to inflict pain and one of the more successful ones. Looking back, I realize that Aidan was always quick to show his emotions physically. When I needed to wean him to go on chemotherapy, he fought it, biting my breast and crying. He bit other children at school and his older sister whenever he was frustrated or angry. Even when he began speaking he preferred to express his emotions with every part of his body except his vocal apparatus. Doctors insisted that he was a normal boy with perhaps less impulse control and more intense emotions than average. “Make sure his rested and fed, give him a lot of praise when he is good, and firmly correct him when he acts out,” we were told repeatedly. We did all those things and more. We tried behavior modification, reasoning, yelling, crying, threatening, and (very briefly) spanking. Nothing seemed to work. By age 5 Aidan no longer bit but he threatened us physically with whatever was nearby – knives, knitting needles, pens – while we stood there helpless. Nothing in my life had ever stymied me the way handling Aidan’s outbursts did.

My dirty little secret is that some days I didn’t like Aidan. Three years into dealing with his behavior on a daily basis, I felt like I was always walking on eggshells and never knowing when something minor – like the night’s dinner menu -- might launch another one of his tirades. I dealt with at least one tantrum a day. Some lasted only 5-10 minutes, but many lasted hours and left me unhinged. One day I was particularly ineffective in halting his inappropriate behavior. I retreated to the living room to pull myself together. He followed me there, climbed into my lap, and slapped me – softly – as if to say I can hurt you if I want to and there is nothing you can do about it. I jut sat there detached; the only way to cope was to feel nothing lest he see that he could reduce me to an uncontrolled mess of tears. There were days when I want to put him into the car, drive to a remote area, and leave him there. What kind of mother feels that way? And to whom can she admit such horrible thoughts?

Aidan’s struggles left me questioning not only my parenting skills but also my capacity to love. What were the bounds on “unconditional love? At what point did self-preservation trump parental devotion? Exactly how much can you let a child hurt you when before your own humanity demands its rightful due? Can you love a child that you do not like much of the time? I want what is best for my children, but I cannot care for them if I cannot care for myself. Like they say on airplanes, “Secure your own oxygen mask first and then secure your child’s.” If I allowed my son to treat me like his whipping boy and still come back for more, what was I teaching him? Would he grow up to believe that he could treat women badly and expect them to love him anyway? And was I teaching my daughter that sometimes love hurts and you just sit there and take it? Were these the valuable lessons that my “unconditional love” conveyed?

“I love you Mommy,” he said from his carseat after a particularly bad morning that included threatening me with knitting needles and repeatedly banging his trampoline against the door after being put in time out.” “Really?” I replied with an air of dismay “It’s hard to tell that from the way you treat me, Aidan. The way you treated me this morning? That is not love. That is NOT how we treat the people we love.” “Fine,” he replied then added viciously, “I guess I don’t love you then.” I sighed, “I guess not.” He apologized later that day and, I’ll admit, I had to force myself to accept it because I know that it is my responsibility to teach him not only how to behave but also how to forgive. So no matter how much or how often he hurt me, I had to keep coming back to him. I had to teach him to manage his feeling and express them in other ways because if I surrender this responsibility, there would be no one else to do it. But there were days when I wondered how long I would be able to keep forgiving him.

Aidan had been seeing a developmental pediatrician, but a year into therapy Aidan’s outbursts were becoming increasingly violent. At one visit my eyes filled with tears as we discussed the situation. The doctor raised the possibility that I needed anti-depressants. “Anti-depressants,” I thought to myself, “I’m not depressed: I’m Italian-American. We emote.” I didn’t need drugs to “take the edge off parenting” as the doctor had suggested; I needed skills to teach my child to behave.

On the advice of our general pediatrician, we sought the care of a psychologist. During our two visits she probed every nuance of Aidan’s personality – his sensitivity to smells, clothing tags, and loud sounds; his persnickety approach to food and clothing; his boundless energy – and determined that he likely had Sensory Integration Disorder. She referred us to occupational therapy where they confirmed the diagnosis. For the next four months, Aidan attended weekly one-on-one therapy sessions where he learned to regulate his behavior. My once impossible little boy learned to express his emotions verbally. He started saying things like, “I feel very angry and I want to hit something” and “I’m in a bad mood.” His tantrums and physical abuse waned substantially. I learned to help him cope with his negative emotions. The decibel level in our household plummeted, as did our stress levels. We started to find even keel.

While Aidan’s difficulties are no longer as severe as they once were – he’s largely ceased threatening family members with the nearest potential implement of destruction – he continues to struggle with those strong emotions of his. His threshold for frustration and discomfort of any kind are terribly low. On a good day, he removes himself from stressful situations, but on a bad day he just turns bad to worse.

On Saturday evening he was growing increasingly restless on the trip home from Philadelphia. He continually hit Amelia with the seat belt. Our friends, Greg and Dave, who graciously gave up their Saturday to pick up the kids so that Bill could stay with my puffy self, were growing increasingly frustrated and running out of options. Greg finally turned around and firmly told Aidan that he had to stop hurting Amelia immediately. Fortunately it worked because they probably wanted to pull the car over and just let the kid out on the side of the highway.

When I heard about the ride, I told Aidan to go upstairs and get ready for bed. I also told him he could not participate in our family weekend ritual: sleepover in Mommy and Daddy’s room. He started to unravel and yell at me. He tried to get me to commute his sentence. I refused to yield and walked away.

When I joined him upstairs he was brushing his teeth and crying. He can out of the bathroom and lobbied unsuccessfully one more time. When I again refused he cried, “I am so disappointed” and threw himself on the floor. “I know Buddy, I know you are disappointed but there is always next week,” I assured him. I left him alone, which, Bette Davis like, solves a lot of Aidan’s emotional crises. Shortly thereafter he picked himself off the floor and crawled into bed. I went into to sing his lullabies, "I'm proud of what you did out there. You told me how you were feeling instead of yelling and hitting. You did a good job pulling yourself together." He happily listened to his lullabies and drifted off to sleep.

I walked back to my room and tried to shake off the anger and frustration welling inside me, “Why does he have to be so difficult?” I thought. But then I looked over at Amelia. Amelia could have been born in the jungle and raised by apes and turned out fine. She came with the easy child program installed (although I think the warranty expires at age 11 or 12), but Aidan is a more challenging model. Mothering Aidan has demanded a lot of me. I hade to learn to be at my best with him to deal with his ever-changing moods, to walk away in he heat of the battle, to accept that some battles are simply not worth fighting. Most importantly, I had to make him aware of the feelings that lay beneath his physically intense outbursts, which demanded that I be aware of my own psychological motivations.

It is hard to admit that on particularly bad days, I sometimes wish Aidan away. He can be that difficult, that infuriating. But he can also be incredibly sweet, spontaneous, and loving. Like all of us, he had his vices and his virtues. So we continue to muddle through, he and I. We both practice using indoor voices and “I” statements, we both take responsibility for our mistakes, we both say “I’m sorry,” we both try to listen better. He has demanded so much of me and forced me to become not only a better mother but also a better human being. And I suppose that makes the struggles worth it. Surely we are here to teach our children but I think it is equally true that they are here to teach us.

Monday, August 25, 2008

The Land of the Living

This last week was physically pretty miserable. The experimental drug that I started one the previous Friday caused an enormous amount of edema. On Monday, I weighed 85 lbs. By Tuesday morning I weighed 88 and one Wednesday I weighed 89.5 lbs. Four and a half pounds of water weight in 2 days is a lot on someone my size. My feet, which my Dad calls Freddy Flintstone feet because they are short and wide like squares, looked like cubes on Friday night. Everything was swollen, even my backside. In addition to the edema, the drug caused a great deal of musculoskeletal pain. So nights were pretty painful.

But there was an upside to all this: the emotional fallout that usually accompanies my physical downslides didn't materialize this time. I was calm and peaceful despite the discomfort and the very real possibility that the edema could be a harbinger of doom. I don't know where this serenity came from but I welcomed it as a pleasant change of pace.

I've noticed subtle changes in me over the last few weeks that suggest that I am beginning to accept this new life of mine despite its frustrations and limitations. Months ago I stopped reading newspapers and magazines because I couldn't deal with anything beyond my own little world. Two weeks ago I read Newsweek cover to cover for the first time in over four months. Then I started to wonder where my New York Times had gotten to. I used to spend an hour reading it every morning, but as my illness worsened I just threw it in the recycle been without so much as glancing at the headlines. Suddenly I felt like looking at the pictures and maybe reading a headline or two. But the paper hadn't landed on my doorstep in nearly three months. So I called them, "I haven't received my NYT in three months. Do you know why?" The person on the other end of the line must have thought I was crazy, "You stopped in on May 28th." I have no recollection of doing this but the date coincides with when I had my feeding tube removed. While I didn't restart it, I thought it was a good sign that I actually cared to know what had happened to it.

Last Thursday was the Meet and Greet night for the new school year. The kids were in Philly with my folks so Bill and I went alone. It was my school debut in my new wheelchair. I was nervous, assuming the kids would shy away from me and the adults would be immobilized by that mixture of pity and uncertainty that seems to make us all backpaddle from awkward situations. But I underestimated everyone. Teachers and fellow parents greeted me warmly, many sinking down to "my level" to converse and inquire about how I was feeling. Two children in particular made my day. Alex, a boy I tutored last year until I became too sick to continue saw me in the hall. "Miss Michelle!" he yelled and came over to me. This boy tugs at my heart in a way I cannot explain. He is sweet and shy and simply adorable in his blond crew cut. I was so happy to see him and, without thinking, I opened my arms wide to hug him and he just hugged right back. I asked about his summer and he excitedly told me about basketball camp and meeting some of the Duke players. "Oh, I know you just loved that!" I responded. I was happy to learn that he and Amelia had the same teacher and that I would see him again this year. Later, a little girl in Amelia's class who I helped with her reading when she first arrived from Mexico, stopped me to say hello. We chatted about her summer and she told me about her mother's birthday party. I told her I was glad she was in Amelia's class again and I would be seeing her soon. These two kids acted like being in a wheelchair was "no big thing." To them, I was still "Amelia's Mom," the same person just sitting down. And they helped me to see it that way too. Before I left the school I made plans with the librarian to volunteer on my good days. She assured me that someone would meet me at my car to help with the wheelchair so it was as easy as possible for me. And I felt excited to have an opportunity to have some sense of purpose and a way to get out of the house once in a while.

Last night I read a French magazine to practice my pitiful French. I had been studying daily until the feeding tube fiasco started then, as time went on, mastering French seemed like a strange idea for a dying woman. But last night I got half way through the magazine getting the gist here and there. I've been paying for on-line Rosetta Stone lessons for the last 6 months and I don't think I have gone once. Maybe today I will start again.

Today I woke and quickly did my chest percussion vest. This is a vest that vibrates very quickly to loosen the secretions in my chest so that it is easier for me to cough them up and I don't have to retch violently four times a day. So far, it seems to be helping. I still cough but I am not vomiting as much. After my 20 minute "Good Vibrations" session, I quickly dressed and ate my token soy yogurt (20 years later I still miss the real thing), and went outside with the kids to wait for the bus. I took photos to commemorate their first day of school as I do every year and waved good-bye as they drove away. I don't think I have waited outside with them since last fall.

I seemed to have rejoined the land of the living albeit in small doses and small ways. I know now that my old life is gone. The Michelle that darted from one activity to another with boundless energy no longer exists. I think of my old self as a hummingbird, colorful and busy, flapping it's wings wildly and darting to and fro sucking every last bit of juice out of life. I liked that version of me and I do miss her but she simply doesn't exist anymore.

When I first moved to North Carolina, I was a huge cyclist and I spent many an hour riding in the rural areas around Chapel Hill. On those rides I used to watch the hawks above me, awed by their grace and ease. There I was furiously peddling to move forward while these birds of prey just seemed to glide effortlessly with the air currents, watching and waiting for something worth the energy expenditure. Now I realize I am like the hawks, minus the gracefulness, watching and waiting and discovering that joy and love and happiness are all still available and I don't have to chase after them or create them after all. I just have to be patient and aware and these happy moments will come.

Saturday, August 23, 2008

Paris, Je t’aime

Four years ago, we spent three months in Paris while Bill worked at the Pasteur Institute. Our time there exceeded even my greatest expectations and I hold those memories very dear to my heart. At the time Amelia was nearly 5 and Aidan was 3. I spent my days taking them all over Paris, usually to one of the many parks. I even braved a few museums with them, including the Picasso where Aidan came dangerously close to touching a painting while the guard yelled, “Madame!”

Every Wednesday we went to story time at the American Library, which is just a few blocks from the Eiffel Tower. Aidan, future engineer and admirer of symmetry that he is, had to visit the Eiffel Tower weekly. So, after story time, we grabbed fixins for a picnic lunch on the Champs des Mars in the shadow of the Eiffel Tower. Aidan walked along the streets of the 7th arrondisement carrying a baguette as long as he was tall, gnawing at it along the way. Amelia and I always waited until we reached the “pelouse au repose” [As opposed to pelouse interdit, which means “Don’t even think about walking, sitting, reclining or otherwise disturbing the lawn.”]

Someone once told me the French invented childhood and my time there with the children lends credibility to this theory. We shared an incredibly happy three months together there, even though Aidan was in his terrible threes and I made things worse by refusing to by an overpriced French stroller. Our life in Paris remains one of the leading contenders for the happiest periods of my life.

Aidan does not remember our time in France, but Amelia remembers it surprisingly well. Since our return she has told us repeatedly that she intends to study French and spend her year abroad in Paris. As a special treat, she and I planned to go to Paris last spring to visit and travel with my friend Courtney and her daughter. Unfortunately, my worsening illness forced us to cancel the trip. Amelia was disappointed but amazingly mature about it. At the time we viewed it as a postponement, but I now suspect that the trip will never take place, at least not with me as her travel companion.

A few weeks ago I rented “Paris, Je t’aime” from Netflix. I watched it on a Sunday when I was not feeling very well. I was having a hard time dealing with the fluid increase that occurred when they increased by daily calories in the TPN. So I had swelling in my feet and arms as well as symptoms of pulmonary edema, which made it hard to breathe.

The movie is a compilation of 18 5-minute films, each by different directors and set in one of the 20 Parisian arrondisements. Watching the compilation was bittersweet for me, in part because many of the films have some degree of sadness. But most of my sadness lay in the realization that I will likely never again visit that lovely place. “But you spent three months there,” I reminded myself, “Just be grateful for that.”

Two of the films touched me especially. I am going to give them both away so if you don’t want to know about them, stop reading here.

In one of the films a young women wakes early and carries her bundled baby, via public transport, to a barren daycare where dozens of cribs are lined in rows. Her boy starts to cry as she leaves and she sings the following lullaby to him with love and sadness in her eyes.

Qué linda manito que tengo yo,
(What pretty little hands have I)
qué linda y blanquita que Dios me dio
(How pretty and white that God gave me)
Qué lindos ojitos que tengo yo,
(What pretty eyes have I)
qué lindos y negritos que Dios me dio
(How pretty and dark that God gave me)
Qué linda boquita que tengo yo,
(What a pretty little mouth have I)
qué linda y rojita que Dios me dio
(How pretty and red that God gave me)
Qué lindas patitas que tengo yo,
(What pretty little feet have I)
qué lindas y gorditas que Dios me dio
(How pretty and chubby that God gave to me)

The mother leaves her baby and travels a long distance via metro and bus to her employer’s home. Her employer tells her she will be home late that evening, “You don’t mind, right?” Of course she minds but what is she to say? Then a baby cries and the women goes to the infant and sings the same song, this time with affection but not love. And I ached for her and all the women who leave their children not of their own volition but of necessity. That lullaby played in my head for days, breaking my heart every time.

In the final film the main character, a postal worker from Denver, walks through Paris while she narrates via voice-over in her American accented French about her Parisian vacation. Throughout the film she seems like such a lonely soul, missing her pets at home, eating alone, walking alone. In the final scene she pensively sits on a park bench eating “un sandwich” and observes the scene around her. In her narration she talks about how in that moment she experienced something that she had never felt before in her life: joy and sadness at the same time, but only a little sadness. She felt, “vivant.” [alive]

One thing that struck me about the few French people that I got to know during our time there was that they seemed much more willing to admit to specific losses in their lives and sadness in general. I think we Americans are much more closeted about our emotional pain perhaps that is why we are such a violent culture, the feelings have to erupt somehow. Over the past several months, as I have admitted to my own struggles with my illness and the accompanying emotional consequences, many people have opened up to me about their own emotional struggles. I was astounded to learn how many people I knew struggled with depression and grief for, literally, years without saying much about it to anyone. Now the phrase “walking wounded” seems much for accurate to me. I realize now that we all have hearts that are at least a little broken. Perhaps that is the human condition. What is truly amazing is that we march on, broken hearts and all, though our lives. We continue to live and love and laugh with our fragile little hearts, running the risk of further pain on a constant quest for joy.

Friday, August 22, 2008

The Queen of the Low Probability Evenet

So my heart is totally normal, leaving us (Bill, the docs, and me) all standing around scratching our heads. The weird thing about the edema is that is is worse on my left side, which calls the central venous catheter, the line through which I get my TPN, into the line-up of suspects. The line was not in the right spot a few weeks ago when we checked it by X-ray but since it was infusing fine, we left it alone. Now we wonder if the problem is that it is in too small of a vein or there's a clot somewhere. There was no way the problem was going to get resolved on a Friday afternoon so my guess is that I'll be getting a new line next week. Fortunately, it's easier to replace a line than place one de novo.

I swear my body just sits around dreaming up weird outcomes just to keep us all on our toes.

Have a good weekend!

Wishing and Hoping and Thinking and Praying

Unplanned second post for today ... and not for a good reason.

The swelling hasn't gone away after three days off the Gleevec. I'm off to get an echocardiogram. Whichever of the above four that you do for people in need, send it my way at 1:45.


It’s a Long Story

I promised I’ll get to my ultimate point today; I’m just taking the long route to introduce you to one of the funnier characters that was once a part of my life.

My freshman door was co-ed. Thank goodness for this because coming from a testosterone filled childhood home I don’t think I could have done well with an estrogen dominated dorm. I needed men in my life to make me feel at home. When I moved into my room I noted that my roommate and I were surrounded, three rooms of guys on one side and three rooms of guys on the other. Clearly I was destined to be outnumbered by members of the opposite sex.

Mary Ann, my roommate, and I went to dinner the first night with roommates from a few doors down, Mac and Quentin. Our names alone revealed the huge distances between our pairs: Mare and I from working class Philadelphia and Mac and Quentin from well-to-do families and country club life. But we had fun that first night and many others, ending each meal with “food art” session where we took all our leftovers and made them into a conceptual art piece before sending it to the dish room on its tray.

Mac was the first person I met born with a silver spoon in his mouth, except that it wasn’t just a spoon it was an entire place setting. Mac was old money; he didn’t flaunt it. But all his clothes were from Brooks Brothers and he had the latest and greatest of every gadget. He had traveled extensively and been places that I could only dream of seeing. One day he glanced at my brand new boom box, of which I was so proud, and asked, “Why don’t you have a CD player?” CD players were a novelty at the time and expensive. “I can’t afford one, Mac” I answered, “”My family doesn’t have that kind of money.” He wasn’t judgmental; I think he was just naïve.

A couple months into the year Mac and I were eating dinner together, just the two of us. I took my fork in my right hand and stabbed my meat and proceeded to saw it with my knife in my left hand, butchering it as if it had not yet been slain. “What are you doing?” Mac cried.


“Ok, I have to tell you this. You have the worst table manners I have ever seen. You eat like a Neanderthal.”

Mac was a Classics major so I new he spent his days studying ancient civilizations but I seriously doubted he knew anything about the eating habits of Neanderthals. Nonetheless, I was willing to hear him out.

He took my utensils away. “First of all, put your napkin on your lap,” he instructed. “Now, pick up the fork in your left hand, turn it over and place it gently into the meat,” he directed. “Take you knife in your right hand and place it in front of the fork. Now, cut gently.” The lessons continued. I learned about place settings, placing my knife and fork at 4 o’clock to show that I was finished with my meal, dipping my soup spoon away from me (which I refuse to do because it makes no sense), and much more. To Mac’s credit, he did this with great kindness and affection, which was wholly uncharacteristic of him.

Mac was an incredibly funny person. He could impersonate half the people living in our suite on cue, going from one personality to another. He had a great shtick of Elvis singing songs by various rock bands. He would launch into Elvis’ rendition of Bon Jovi’s “Dead or Alive” or the Doors’ “Do You Love her Madly.” He constantly had me in stitches.

Mac also had a favorite pastime, making prank phone calls. When I took American Folklore my sophomore year, I decided to do my folk-art collection and analysis on prank phone calls. I had a decent amount of fodder from my escapades with Marie and Sue and I added to our work by interviewing other students. Then I went to Mac and discovered that he had hours of prank phone calls on tape. I had hit the mother lode. I dutifully transcribed the tapes and interviewed Mac about the calls. I entitled the paper something to the effect of “Prank Phone Calls and American Teens: A Durkheimian Analysis.” Doesn’t that sound like a loud of academic B.S.! My hypothesis was that prank phone calls were a deviant behavior that cemented adolescent friendships. Sort of like being a foxhole together except that it was fun. My professor loved it, gave me an A, and asked me for a second copy.

Mac and I continued to be friends throughout college and then both happened to enroll in graduate school at UNC in law and public health, respectively. We made a deal fall semester to have a steady dinner date every Saturday night unless someone with real romantic potential were to turn up suddenly. Under such circumstances, we were each free to break the standing date. After a couple months I started dating someone casually. Mac and I continued to hang out and Mac started calling him my “cuddle man.” “Why don’t you sleep with him?” Mac asked. “I hardly know him,” I responded. “So he is just content to cuddle with you? That’s weird,” Mac observed. “You eat dinner with me every week and don’t get anything. Perhaps I have some other redeeming qualities, huh? Ever think of that?” That was the end of that debate.

After graduation, Mac worked for a year and then decided to move to Prague. I went to visit him a year later and spent three weeks using his place as home base and touring around Eastern Europe. Mac was as fun and funny as ever in his new home, surrounded by a supporting cast of eccentric young ex-pats.

Prague is a lovely city. Virtually untouched in WWII, it’s buildings are beautiful preserved and a lovely reminder of a by-gone time. One day Mac and I were sitting together on the Old Town Square. As I looked at the sights a thought struck me, “All these building have been here for hundreds of years before me and will still be here long after I’m gone.” “You’re being a little egocentric, don’t you think?” Mac said puffing on one of his blasted cigarillos.

But I wasn’t. I was feeling my smallness in the existential sense. I was just one person on a planet with, at the time, nearly 6 billion others, just one of the billions of people who have ever taken a spin on this big blue ball. Oddly, the observation made me feel very peaceful. For some reason it made me realize that I am only one person with a limited sphere of influence and that all I could do, that anyone can do, is their best. I didn’t have to change the world; I merely had to be kind, honest, decent, and loving. It was very liberating.

I just finished reading C.S. Lewis’ Miracles. In reading his work I realize that I could never have earned my Doctor of Philosophy in the actual field of philosophy. I had to read many paragraphs several times to finally understand Lewis’ logic, but I persevered. In it he tells the story of a friend who wrote a play in which the central idea was the protagonist’s pathological fear of trees. The play included other side stories as well and, when he finished it, sent it to someone for comment. The critic responded, “ … cut out those bits of padding about the trees.” Lewis’ point is that we are all part of a very long story, God’s story, one with a complicated plot.

I was thinking about all this last night while I was waiting for sleep. Thinking about Mac and our unlikely friendship, that moment on the Old Town Square in Prague, and God’s long story. I thought that perhaps to try and figure out our place in the world, in the history of the world is like looking at one Polaroid photo and trying to construct an entire life from that one picture. It’s just not possible. And I don’t think it is possible for us to know or even have an inkling of why we are here, individually or collectively. All we know is, we are here for now. And that just needs to be enough to inspire us to be the best that we can be for each other and ourselves.

Thursday, August 21, 2008

Medical Update: The Good, the Bad, and the Ugly

I confess that the Italy post were a distraction, a little smoke and mirrors on my part to avoid discussing more difficult realities. Today, for whatever reason, I feel like I can write a medical update.

The Good News

I've gained weight. My bras actually fit again and, for a few of them, my cup runneth over. The weight gain is most noticeable in my upper body, especially my arms so I no longer look like a walking stick figure. The TPN is definitely doing it's thing. I try not to get furious when I consider the fact that I wanted to go directly to TPN ("Go directly to TPN. Do not stop for a G/J tube, or a second G/J tube. Do not owe thousands of dollars"). When the anger wells in me I try to meditate instead. I haven't hit nirvana yet, but I'll keep you posted.

Yesterday we spent an hour on the phone with my darling rheumatologist, Rick, in Charleston. The call was in lieu of the visit I was supposed to have yesterday but felt too exhausted to make. Someday I'll write more about this wonderful man because he is one of the few physicians I have met along the way that I not only consider open minded and intelligent but also warm and caring, a real mensch.

We discussed my current physical status at length and the options before me. We developed a plan of attack, and Bill and Rick divvied up tasks to investigate some newer drugs that have antifibrotic qualities. But I had an ulterior motive for the call.

When I was a young girl and began reading novels, I would always read the ending part way into the book. If I did not like the ending, I would sometimes stop reading the book. Sometimes I would still read it but keep my emotional distance from characters that I knew would fare poorly. I haven't done that in a very long time. I happen to be reading a mediocre book by John Grisham right now. It's very light and easy and takes places in Italy so it suits me for now. I skipped ahead yesterday to uncover the denouement and sort of chuckled at the 10-year old me resurfacing again.

Once she was there, she was not going back. So, during the call with Rick, I finally asked how it ended for pulmonary fibrosis patients. I needed to skip ahead for a few minutes so I could brace myself for what's coming. Rick, to his credit, answered calmly and honestly. Eventualy my heart, which is already working so hard beating 100-120 a minute at rest, will start to give out. Pumping against the increasing pressure in my lungs will prove to be too much and I will, most likely, die from cardiac failure. Unless of course I get another air embolism or sepsis or something fun like that.

A little anatomy lesson: The blood without oxygen (deoxygenated) enters our right atrium through the superior and inferior vena cavas. The blood enters the right ventricle from there and then enters the lungs through the pulmonary artery. In the lungs in becomes oxygenated via the capillaries the cover the alveoli (air sacs). The blood then returns to the left side of the heart which pumps it out to the rest of the body.

The pulmonary fibrosis has left me with insufficient surface area to oxygenate my blood and I cannot take very big breaths either. So my lungs and hert work overtime just to keep all the cells in my body supplied witht he oxygen that they need. So far they are managing. I had an echocardiogram in July that showed a completely normal looking heart, normal size and normal pressures. My heart, physically, is holding up. The question is for how long. I suppose the good thing is that we will have advanced warning. I will develop signs of right side heart failure and the echocardiogram will show an enlarged heart. At that point we will know I am nearing the end.

I suppose I'm glad I peeked ahead. The problem is that I cannot put this book down. I can't walk away this time because I'm not the reader, I am the author and a powerless one at that.

The Bad

A week ago we decided to start a new drug tht is being used in Phase II trials in scleroderma. It is called Gleevec and is largely used for stomach cancer. There has been a case report of a patient with recalcitrant scleroderma improving on the drug. Bill really wanted me to give it a try so I agreed. Within three days I felt horrible. I developed edema (fluid) everywhere and horrible muscle pain. I even had edema in my gums that was making it impossible to sleep. So I am off that drug now. We will try it again in a few weeks at a lower dose and see if I can avoid the side effects this time.

The Ugly

When the interventional radiologist put in the first G/J tube, they had to move my stomach to tack it up against my abdominal wall. Something about that procedure seems to have irrevocably changed the amount of food that I can consume. The tube was removed three months ago and I can still only eat about 3/4 c worth of food at any one sitting. I don't think it's ever going to go back to normal, which means I will likely be TPN dependent for life. I cannot tell you how much this disappoints my inner glutton. It is good news for my dinner companions, however. We went out on a double date last night with our friends Courtney and George (yes, I left the house with make up on and everything!) at my favorite vegetarian restaurant. They have the most amazing gnocchi I have eaten in the United States. I managed to eat maybe 9 of them so everyone else devoured the remainder. At least it doesn't go to waste ;)

Wednesday, August 20, 2008

Lost In Translation

I wrote this before I started TPN but I had to have one of my firends check my Spanish for accuracy before posting ;)

Gloria has been our housekeeper for over 4 years. A friend of a friend recommended her after we fired our first cleaning woman because we had a difference of opinion about whether or not taking out the trash was included in her job description. So Gloria entered our lives unassumingly and on a once a week basis.

At first Gloria and I kept a polite distance. I felt very awkward about having a housekeeper because I felt like I should be able to do things myself. But scleroderma causes severe wounds on my fingers so cleaning is difficult and painful. We are fortunate that we can afford this luxury. To assuage my guilt I tried to make Gloria’s job easier. I stripped the beds every Friday and I tried to remove clutter from the bathroom and kitchen counters so it was easier for her to clean. In doing these things, I made myself feel like Gloria and I were a team rather than part of some hierarchical relationship.

Over time, Gloria and I started to communicate more. I spoke to her using the Spanish that I remembered from high school. She spoke back to me slowly in her native tongue or in the English that she was learning in school. I learned more about her and her children: two boys and a girl. My Spanish and her English improved and, when nothing else worked, we used gestures.

It did not take long for our friendship to bloom despite all our differences. I have learned that between two open hearts race, ethnicity, educational status and all those other barriers matter very little. Gloria and I came to rely on each other. She took on increasing responsibilities in my home as I needed more help. She often asked us to help her when she need to perform tasks via the Internet and I learned how hard it must be to function in our technology driven world when you live on the other side of the digital divide. Her daughter, Ruth, spent a few weeks living with us when Gloria had to return home to be with her dying mother.

When Gloria had her fourth child, I visited her home for the first time. She proudly showed me her new daughter, Michelle. Michelle was only a few weeks old but she had the most enormous crop of hair I had ever seen. Gloria and I visited while Amelia and Ruth cooed over the baby. Gloria showed me pictures of her and her 11 siblings. In one photo they were all young children posed with her parents. The black and white photo reminded me of a photo from the 1920s, but Gloria and I are almost the same age. In another photo, they were all gathered together at her parents’ 50th anniversary celebration, all beaming with their great grins. I learned more about her childhood & her life. She grew up in a rural area and her parents had a small dairy farm. The made cheese and sold it in the local market. She spoke lovingly of her mother who had died just a few weeks after Michelle was born and showed me the altar she made in her mother’s honor. Her small home was filled with love: photos of her children and her family, frijoles simmering on the stove, and four beautiful, respectful children treating each other and their mother with great kindness.

As my illness worsened, I tried to explain it to Gloria. She understands that I am very sick and she knows that my lungs are badly damaged. One day, after the feeding tube was placed, I was lying on my bed crying in pain. She lay down next to me, “Gloria, I don’t want to die.” I told her in Spanish. “No te preocupes [Don’t worry],” she consoled me with a loving embrace, “¿Quieres que te de un pneum? [Do you want me to give you a lung?].” This tells you everything you need to know about Gloria, she would give until it hurts.

Last week, when it became clear that I needed to go on TPN, I told Gloria that I needed to speak to her. I tried, in my best Spanish, to explain the situation and what was about to take place. I told her that if the TPN did not work, that I would likely die in a few months. She cried, “No! No! No!” We held each other and I tried to calm myself. I explained that I was too weak to continue to cook every night and I wondered if she could come one more day a week to help me cook. Gloria wiped her tears and grew very serene. She spoke to me slowly so that I could understand her. She would do whatever I needed her to do. All I had to do was ask her. Her boys would care for Michelle, and she would be with me as much as I needed.

We continued to speak and it was as if I was channeling Sister Angela, my high school Spanish teacher. Sr. Angela, who we affectionately called Hermana Rana [Sister Frog], was a rarity in so many ways. First of all, she was African-American. How she ever ended up in an order of Polish nuns is beyond me. When she wore her white habit, she joked that she was a reverse Oreo cookie. She had an amazing sense of humor, was relatively young, and had actually dated before entering the convent. She even had a prom picture to prove that she knew all about dating boys. Her candor made for very interesting advice and conversations. “Now girls,” she would embark on one of her funny speeches, “when you go down to Senior Week and you have your bosoms hanging out all over the place, don’t be surprised when the boys are bothering you.” I’m not sure what the point of the speech was, I was too overcome with the exaggerated way she said “bosom,” to keep listening. So I never got if we were
supposed to cover our bosoms or just be prepared to deal with the consequences of partial nudity.

Suddenly I could understand Gloria far better than I usually can and I was finding Spanish words that I hadn’t spoken in years. I poured my heart out to Gloria. My fears and worries about myself, Bill and the kids tumbled out of my mouth. She looked at me with her deep brown eyes and calmly told me, “Tranquila [Be calm], Tú estarás bien. Los niños estarán bien, Todo estará bien. Dios es grande.” She shared her hopes that the TPN would make me well and she told me that I must be hopeful so that my body could accept the treatment. Then she braved darker waters. She spoke about her mother, a good person who loved her children and worked hard her whole life, but who has passed away. Meanwhile her father – a drunk and lazy man – is still alive. “It makes no sense,” she continued in Spanish, “We ask God, why?” And then she told me the answer, “Because God needs angels, too. And if he takes you it is because he needs you.”

When I was in my early twenties, academic pedigrees impressed me. But my years in the Ivory Tower and my experiences out in the broader world have taught me that educational attainment and wisdom are completely unrelated. My mother always makes self-deprecating remarks because she did not go to college but she is an incredibly bright and resourceful woman. She writes and speaks beautifully and has a knack for rigging unique solutions to life’s problems. Because my father attended college and was a successful engineer, my mother assumes that her five children got their smarts from him. Over the years I have tried to tell her that not being educated does not mean that one is not intelligent. I have tried to explain that my own love of writing comes from her. But my efforts have fallen on deaf ears.

As I sat with Gloria I thought about how she teaches me often and poetically. One day I felt badly because I was not able to speak with her because my cough was too severe. “Lo siento que no puedo hablar contigo. Quiero hablar pero es muy difícil para mi. [I’m sorry I cannot speak with you. I want to but it is difficult].” “No te preocupes [Don’t worry],” she responded, “Escucho a tu corazon [I listen to your heart].” Felled by her eloquence, my eyes welled with tears.

Gloria and I finished our heart-to-heart and she resumed cleaning the house. When Bill arrived home from work, I told him about the conversation. I told him all the loving words Gloria had spoken and how amazed I was that I was able to understand her. Bill, always practical, then asked, “So what days is she going to come to help with cooking?” “I dunno,” I answered, “I missed that part.” He looked at me with his face schrunched up, “You understood everything else but you didn’t understand what day she is coming.” I shrugged my shoulders, “I understood the important part. The day she comes is just a technicality.”

Tuesday, August 19, 2008

Sunday in the Park with James

Growing up in a large middle class family in Philadelphia was a serious impediment to obtaining my “own wheels.” My parents not only could not afford a second car for their aging brood, they could not afford the insurance premium increase associated with having an adolescent on the policy. So, I never learned to drive until I was 21. Fortunately, most of my peers shared my predicament, which left us with two options: sponge off the few kids whose parents could afford the luxury or submit to being chauffeured around our parents. I chose to do both.

My friend Kelly had a car and often provided transportation for 10 of us at one time. No one talked about seat belts and car safety in those days. State legislators had just finished raising the drinking age all over the US and were busy resting on their laurels. I am sure it was illegal for that many of us to squeeze into a car but we never once got stopped while the car was in motion. No one ever pulled us over when we did Chinese fire drills or had so many people in the car that arms and legs were poking out of the windows. Then again, with Philly’s violent crime rate I suppose the cops had better things to do. One hot sumer night, we did get stopped when a gang of us was hanging out at a park close to curfew. You should have seen the looks on the cops’ faces when they discovered that a dozen teenagers were sitting on the hoods of two cars literally drinking milk and eating cookies.

The alternative means of transportation available were our fathers. My dad, James, came ready made with a perfect chauffeur name. Sue’s dad’s birth name, Hugh, simply would not do so we dubbed him Edward. Marie’s dad was the most unreliable person on the planet so he never took us anywhere (except once to Great Adventure and he was a hour late to pick me up). Whenever we needed a ride home, Sue or I would call our dads, “James (Edward), please do bring the car around.” I hear that most teenagers find it embarrassing to be driven around by their parents, but it never bothered me in the least.

My Dad came to visit this past weekend to keep my younger brother Keith company on the drive from Philly. My Dad, Keith and Bill spent Friday and Saturday cleaning out the storage room and attending to various other unfinished projects around the house. On Sunday, Bill and Keith took the kids to a water park in nearby Greensboro, leaving my father and I alone. “You and Pop-pop can argue about Obama,” Amelia suggested. It hasn’t taken long for Amelia to figure out how my dad and I like to spend our time together: debating. Well, at least, when I could debate …

Over the last week I have realized that there are two keys to maintaining my sanity. The first is to allow myself to curl into a ball and cry whenever the need strikes, more on that some other time. The second is to get out of the house on a daily basis. The latter presents a real challenge however.

I took Amelia to the orthodontist last week. I made it there but bgean coughing violently upon arrival and puking in the car. She had to check herself in and go through the first part of her appointment without me while I pulled myself together. This is always the risk of leaving the house. Because I never know when and where a bad fit is going to occur, I take the chance of landing on my hands and needs in an aisle somewhere puking and gasping for air. The odds of it happening are greater when I am walking than when I am in my wheelchair; I guess the increased demand on my lungs instigates the fits at times. Unfortunately, I cannot get the wheelchair out of my car alone nor do I have the strength to roll myself for very long. Consequently, I am not a big on making solo trips requiring more than 10 minutes of walking.

There my Dad and I sat Sunday morning, needing something to do. “Can you take my out in the wheelchair,” I asked. He readily agreed and lassoed up Zara, our younger dog. “There’s a nice park over in Chapel Hill with a paved path, we can go there,” I suggested.

Despite having had open heart surgery last year, my father is in excellent health and looks far younger than his nearly 76 years. He is a handsome man, even more handsome than he was in younger days. Like George Clooney or Gary Grant he just grows more and more attractive with time. Despite his petite figure he seems to have escaped a Napoleonic complex. I chuckle at his tiny hands that look like little paws. Closer examination of them reveals that his calm demeanor is a façade; his fingernails are bitten down to nearly the cuticle. He is not ashamed to admit that he sometimes buys sneakers in the women’s department because they fit him better and the selection is wider. But my favorite of his physical features is his hair, which is as pure white as cotton. He went grey very young and was completely white in his 50s. He just wouldn’t seem like my dad without that beautiful hair.

I drove us to the park, which my Dad recognized immediately from the children’s playground days. We used to take them there with their strollers and tricycles. We started down the path, winding first through the playground and rose garden and then through a small neighborhood of cinderblock and shotgun houses. “That’s the one I lived in that burnt down,” I said, pointing at a yellow house a block away. We chatted about the house, the fire, and the sad fact that the roommate that I shared the house with died two years ago in a car accident along with his two-year-old daughter.

The trail first opened in 1995 and linked the eastern side of Chapel Hill to its major north-south artery, then known as Airport Road. Other than the initial part of the trail, where one can here traffic and the barking dogs boarding at a nearby kennel, the trail is peaceful and quiet, containing only the sounds of nature and other trail-lovers. It is truly an oasis with a large variety of trees, vines with leaves as big as my torso, and lots of critters and birds.

On this Sunday morning, my father and I were alone most of the time and chatted comfortably. The debates that long characterized our relationship are now long gone. He knows I no longer have the voice for that and that our words are better spent truly enjoying each other’s company. We talked about the house he and my mother just purchased, how it seemed odd to do so at his age but that he was happy with the decision. He filled me in on all the family news: my Aunt Mary moving back to the city, the plans for my Aunt Dolores’ 80th birthday party, and my niece’s college plans.

At times we talked about my situation. My father is not one for platitudes, “No one can tell you that they know how you feel. They don’t.” He acknowledging my suffering without taking the next step that so many people feel compelled to take. He didn’t tell me, “Don’t give up,” though I know he wants to say it. He holds back his tears, he keeps his voice calm, but I can hear his heart screaming, “Please don’t go.” I don’t think he can bear the idea of losing me.

I have always thought that my dad and I were “two peas in a pod.” We share a profound adoration for the written word. And I inherited my wanderlust from him. When I was young and he realized that I was bright, he constantly engaged me in debates, always taking the opposing point of view. Being a stubborn child I took every challenge and went head to head at every opportunity. He made me a thinker (and a stubborn pain-in-the-ass as well). But the most important thing my father taught me was that displaying one’s emotions is a strength not a weakness, regardless of gender.

At one point in the walk I remarked to him on the irony that he, my 76 year old father, was pushing me, his 39 year old daughter. “I get angry at God sometimes" he confessed, " But mostly I think he just puts us here and then he can’t really fix much of anything.” We continued with our journey. He pointed out a sweetgum tree. “They really should put signs on the trees so people can learn what they are,” he suggested and I agreed. He loves the trees and will spend hours wandering through Pennypack Park, books in hand, trying to identify the different varieties. He asked me about one strange-looking tree along the way. “That’s not the tree you see,” I explained, “It’s the vine covering it. Vines like to live on the trees here.” I thought about the Spanish moss and the wisteria, two of my favorite tree-clinging vines. “It seems like that would be bad for the tree,” my dad observed. “Sometimes I think it’s symbiotic,” they both get something from each other. This concept – that of mutual benefit through shared resources -- seems to happen so easily in the natural environment yet is somehow lost on us humans at times, like we are all still 2 and playing in the sandbox.

We were silent for a little while. “I love you Dad,” I said, voice cracking. He ruffled my hair, expressing everything without saying a word. It’s hard to admit how much you need someone, how much you love them, how much it hurts. There we were, my elderly heartbroken Dad keeping me moving, literally and figuratively, while I feed the hope in his heart that, with help, I can keep embracing the joy that remains available to me and fighting one day at a time to accept this new life that I have for as long as I have it. Symbiosis, indeed.

Monday, August 18, 2008

The Last of the Italy Logs

Well, this is the last of last year's travel logs. Starting tomorrow I will get you up to speed on the last couple of weeks activities. I hope you enjoyed the break from the whole living/dying schtick I've got going.

The Kindness of Strangers

I have coughing fits nearly every day. I know when they are about to happen and, if I act quickly, I can usually keep them from getting too severe. I was at the pool with the kids last week and I could tell that one was about to occur. Not wanting to leave them unattended, I delayed and missed the opportunity to avert a crisis. By the time I got to the locker room to get money for a cold water, it was too late. I was coughing too hard to even get the key in the lock. Soon three young Italian women came over to help me, but I was completely unable to speak. Then I heard someone speaking English. An Irish women asked me what I needed and took my key. While she rifled through my bag, one of the Italian women ran and got help. I managed to get myself to a bench and tried to breathe. Before I knew it I was flanked on either side by two of the lifeguards. Next thing I knew one had my shoulders and the other had my legs. Mind you I was wearing the teeny bikini. “Oh god, where are they taking me,” I thought. They placed me on the ground, which made it impossible for me to get in any air. I scrambled back onto the bench and continued to struggle. Finally I got out the words, “No medicine. Water, cold water.” While we waited for water, one of the lifeguards kept repeating, “Calma, Calma.” I realize now how bad these fits must looking because I had amassed a pretty huge audience. When the water arrived, one of them proceed to pour it all over my head and back. When I had fantasies about a gorgeous, bare-chested Italian man taking my breath away this was NOT what I had in mind. I finally was able to convey the idea that I needed to DRINK the water. About this time Loredana, who runs the snack bar, arrived with ice water. She had seen me have a much less severe attack they first day at the pool and had remembered the ice. Then an American women I had been chatting with earlier in the day arrived on the scene and asked if I needed her to translate. By this time the water was working it’s magic and I could speak. The lifeguards asked if I need an ambulance and I explained that the coughing fits occured frequently and that it was now over. I explained the situation to the American who translated and, I thought, made it clear that I was now fine. Loredana took Aidan and another parent watched Amelia so that I could pull myself together.

When I went out to the snack bar to get Aidan, he was happily sucking on a lollipop. Loredana told me that the ambulance had arrived and asked if I wanted to see the medic. I felt so badly about all the fuss that I agreed. The medic took my vital signs and there was much ado about my blood pressure, which was 80/60 but not unusual for me. I could catch a word here and there and it was clear that everyone thought I should eat and lie down. The medic asked if I wanted to go to the hospital and I refused. Loredana handed me some crackers and Alessandro, my new best friend, made me lie down in the infirmary. Once I felt like I had rested enough to make everyone happy I sat up. Alessandro asked me to call my husband to come get me so that I wouldn’t have to take the bus home. Once I explained that we did not have a car, he arranged to borrow one and took me and the kids home. I wanted to kiss him for sparing me the 1/8 mile walk up a 30% grade to the bus stop. I cannot express how much I hate that walk.

Throughout the entire ordeal I was struck by the reality that here in a country where I know virtually no one, all of my needs were met in an instant by strangers. It makes you feel good about the world when somehow, someway you have everything you need even when you are incapable of getting it on your own accord.

Mangia Bene!

It will come as no surprise that eating has been one of our greatest pleasures here. I like the food so much here that I lay awake at night thinking about what I’m going to eat the next day. Granted, I am awake because it is hotter than hell, there is too much light in the room, and our fellow dorm residents stay up talking until 2 am. I have a very narrow range of acceptable sleeping conditions and I find myself wishing I was a sleep slut like Bill who can fall asleep under any circumstances. So I alternate between thinking about food and singing Schoolhouse Rock songs to myself. The kids have really enjoyed that DVD, but I can’t get “Lolly, Lolly, Lolly” out of my head.

I’ve never been a big meat-eater but 6 weeks in Italy has turned me into a carnivore. The meat here tastes so much better than in the US. Even turkey, which is hardly a popular Italian meat, is infinitely better than ours. Amelia eats it plain with her breakfast and I find myself eating two sandwiches everyday for lunch. Similarly, the eggs are absolutely delicious. In the US I tolerate the yolks of a hard boiled eggs while I relish them here. I now have some serious concerns about US poultry production. The salami and proscuitto are incredible, especially when paired with melon or piadina (the delicious Italian variant of a tortilla). We’ve also eaten an awful lot of olives, an addiction that might prove to be expensive to keep up on the other side of the pond. And Amelia and I have also developed a real affection for tuna packed in olive oil; I will never go back to the spring water variety if I can help it.

The Lonely Planet guide has a sidebar detailing the 5 Italian restaurants to visit if you had one night left in Italy. To our delight one of them, Osteria del Ghiotonne, is in Perugia. We went there with my best friend Marie and her husband Jan and made complete pigs of ourselves. I was on about day 5 of steroids and really enjoying my new ability to chow down. We ate a platter of mixed antipasti and another of mixed salumi and melon. Then everyone else devoured their pasta dishes while I enjoyed a very hearty, peasant-style vegetable soup thicken with toasted bread. After that Bill, Marie and Jan moved onto their meat dishes while I enjoyed the lightest, most delicious gnocchi I have ever had. Gnocchi, for the unindoctrinated, are made from potatoes and flour. Made poorly they lie like bullets in your stomach. But these gnocchi were the lightest that I have ever eaten, perhaps because they were not made with cheese as the usually are. I’m still thinking about them. We finished our meal 100 euros lighter, a pounder or two heavier, and incredibly satisfied.

So between turkey sandwiches, peasant soups, Roman pizza, and Perugian gnocchi, I have plenty of fodder for my sleepless nights. I may be exhausted beyond description but at least my stomach is happy.

The Tipping Point

Here in Italy I could no longer ignore the reality that my lungs are failing. I have known for several months that I was not feeling as well but I kept hoping it was just temporary. On this trip, however, my disease final brought me to my knees. I keep thinking back the the Scala Sancta in Rome. The stairs were brought to Rome by Constantine at the request of his mother, St. Monica. Pilgrims ascend the stairs on their knees only. I didn’t join them but I felt as if I were among them if only in a proverbial way.

During my time here, the metaphor of emotional baggage seemed suddenly apropos. As I watched the children in Santa Marie Novella station that first day, I had to choke back tears. Each had a smaller bag drapped around their neck. Aidan was dragging two roller bags and Amelia was dragging a bag half her size. All I could carry was a bottle of water and they were forced to compensate, dragging bags half their size but more importantly bearing an emotional burden that seems terribly unfair and premature. I watched them and wondered how their little hearts don’t break. Was I wrong to drag them into this? Not the trip, this life, this drama? Now I realize what they will have to endure when I succumb to this disease and I feel a horrific sense of guilt. And I watched Bill carrying three large and heavy suitcases, the stress unspoken but mounting. Suddenly the size of the emotional burden seemed to have a dimension and I could visualize the burden of parenting the kids alone. What had I done?

For so long I have “done it all” in defiance of my illness. I guess I thought if everything seemed normal then indeed it was. Here, in Italy, I finally came to my senses but not in the way I expected. I expected to be overwhelmed by the beauty of the landscape, the food, the sites but instead I was overwhelmed with the reality of my own life. Here I finally realized that by burning the candle at both ends I was using it up at double the rate. I often think the Rolling Stones could not have been more correct in observing that we don’t always get what we want but rather what we need. Had this been an easy trip I would have returned to life in the US and continued as normal. But being brought to my knees forced me to make a very difficult decision to stop working. While I had been contemplating it for a long time, I needed something to force my hand. And now that the decision is made and all the appropriate people have been told, I feel tremendous relief and, admittedly, a little trepidation because I can no longer define myself by my career. But the decision feels very right. I hope that when I finish up at the university (I vest in December) I will be able to focus my energy on my health and my family. I hope this will maximize the quality and length of my life.

Today we missed our last of three trains on our way back from Rimini. Bill ran up to the station while the kids and I waited in the sottopassaggio (underpass between platforms). Bill was taking forever and I really had to use the bathroom. I had been feeling a little better and earlier in the day had even pulled luggage on my own. I told the kids we had to get the bags up the stairs. “Mommy, you can’t carry that bag,” Amelia insisted pointing to the enormous bag that comes up to my navel. “I’m going to have to. I really gotta pee,” I told her. I sent her up the stairs with the smaller bag. I grabbed the top of the big bag and told Aidan to get the bottom. “I can’t,” he said. “Yes, you can,” I assured him, “Just help a little.” Aidan and I got it half way up the stairs and then Amelia came and grabbed the side handle. And the three of us got that bag up the stairs. When we reached the top I was still breathing easily. And I looked down at those two little kids and I thought, “Wow, we’re a team.” Six weeks ago I wasn’t sure we’d be able to stay, but the four of us managed to pull together and make it work despite the challenges. We may never win any competitions but we may just pull each other though the only race that really matters.
When we found Bill, he looked at us oddly, “How’d you get the bag up the stairs?” He asked. “We did it together,” I replied with the kids beaming proudly. If nothing else, this trip has shown them how incredibly capable and self-reliant they can be. “Are you ok?” he asked, looking worried. “Yeah, I’m ok.” As we exited the station in search of someplace to spend the two hours until the next train I felt a glimmer of hope. Maybe things are bad, but not so bad. “I can pull that,” I said to Amelia grabbing the suitcase from her. I walked on, finally able to pull my weight, and I felt incredibly at peace.

Sunday, August 17, 2008

More Italian travels ...

A whirlwind weekend in Venice

We decided to take an impromptu trip to Venice last weekend. We’ve learned that breaking up long train rides makes the trip more bearable for the kids so we spent the first night in Bologna and then went on to Venice. Our first afternoon we headed to Piazza San Marco where the kids had heard there were a lot of pigeons. I’m not sure why but the kids are incredibly fond of pigeons, they were similarly intrigued by them in Paris. We purchased some pigeon feed for the kids and they happily began feeding the pigeons. In moments they were literally covered in pigeons; pigeons on their heads, their arms, and swarming about their feet. Before long they had mastered catching them. This entertained them for at least 90 minutes.

Bill and I noticed that they were setting up for a Peter Gabriel concert that was to take place that evening. We debated whether to come back for the concert but decided it would be too late for the kids. While the kids played with the pigeons, I heard a familar haunting voice. Sure enough, they were doing a sound check for the evening’s concert. I watched through my telephoto lens and could see Peter Gabriel singing on stage. He ended up singing 5 songs so we got experience the concert after all.

Venice was, of course, swarming with tourists, but once we walked two streets beyond the major tourist attractions we seemed to be in the company of locals. We spent the weekend wandering through the streets of Dorsoduro and Cannareggio, eating makeshift picnics from grocery store items, and riding vaparettos (the water buses). We also went to Murano, the island famous for its glassmaking factories. We saw few of the sights, choosing to let the kids dictate our activities. But we had a great weekend just being together. Venice is so unique not only because of the canals but also because it is so colorful. The buildings on the back streets are lovely shades of coral, yellow, orange, and red and the shops are filled with the most beautiful glassworks. Two days was not nearly enough; we all hope to return someday. And the food was just fabulous! It was such a treat to enjoy seafood after 4 weeks in landlocked Umbria.

Diplomatic Immunity

A friend of mine is married to a Marine and, consequently, has moved her children all over the US. For the first several months after every move she has noticed that her children are sick more than normal as if they are encountering a whole new set of microbes. That must be what we are experiencing here because we’ve had a lot of illnesses in only 4 weeks.

About 10 days after arriving, Aidan feel asleep on me while we were traveling via bus to Florence. [Aside: When I was standing in line at the bus station the day before we were to leave for Florence, I overheard that there would be a train strike the next day. The strike was to last for 12 hours from 7:30 am to 7:30 pm. Then, everything would go back to normal. Apparently this happens about once a month. I have no idea if the strikes are effective but, if not, perhaps they should look into extending the 12 hour limit. It was lucky that I overheard it because otherwise we would have arrived at the train station to following day to discover we had no way to get to Florence. But I digress...] I glanced down at Aidan and noticed he had red blotches all over his neck, face and ears. I pointed them out to Bill and he dismissed me, “It‘s probably just a heat rash.”
Bill and I have a long history of disagreeing about the kids’ ailments. Since he is primarily a basic scientist, he seems to have forgotten the cardinal rule of pediatrics: Always trust a mother’s instincts no matter how kooky she might seem. The first time Bill dismissed me Amelia was just shy of her first birthday. My normally happy little girl was a pill for the first time. I told Bill that I thought she might be getting her first tooth, and that perhaps we should give her some Motrin. He reached in her mouth, felt around and told me I was mistaken. The next morning Amelia greeted me with a big smile when I got her out of her crib. There on her bottom jaw was her first tooth. I glared at Bill triumphantly, “Told you so.” Similar showdowns have occured on many occasions. Most recently, I correctly diagnosed Aidan with scarlet fever before Bill did. One the bus to Florence, however, it didn’t matter if it was a heat rash or something else. There wasn’t anything that we could do about it.

We arrived in Florence and proceeded to drag the kids all over the city for hours. When we returned to the hostel, I noticed the rash was now everywhere and Amelia had also developed it. But neither child seemed sick so we didn’t worry about it. The next morning Aidan developed GI symptoms and Amelia looked like she was the victim of a new strain of small pox. Her face looked absolutely horrible and remained that way for over a week. She dealt with the many stares from strangers really well and had no other symptoms so, all in all, it was a pretty easy illness.

About three weeks later, Aidan developed his second GI ailment. Ten days later it is still going strong. Then I started thinking about all that bottled water, “Maybe these Italians know something I don’t.” Then I remembered my grandpa, Carmen. Carmen was born and raised in Foggia in the region of Puglia. He emigrated to the United States in his late teens, spending some time in Pittsburgh and then moving onto Chicago. I never knew why my grandparents left Chicago but my understanding is that it was in Carmen’s “best interests.” That’s when they ended up in Philadelphia’s less famous Little Italy, Tacony. By the time I came along, Carmen had settled into the typical existence of an elderly Italian-American immigrant. He spent his days in the park with his goombas and still appreciated life’s simple pleasures. I can remember sitting on his porch and hearing him say, “How nice!” when a pretty girl would walk by. He was a character. He still made his own wine, which would have substituted nicely for anesthesia, well into his eighties and when he saw anyone drink water he would warn them, “That stuff will kill you.” I laughed at the memory, wondering if there is some deeply rooted Italian taboo against drinking tap water.

When I mentioned to my mother that Aidan was sick, she immediately asked “You aren’t drinking the tap water, are you?” “Mom,” I reponded, “This is Italy not the third world.” Debate ensued and she, being the Italian-American mom that she is, told me that we should not be drinking the water. I have to admit that I did take Aidan off tap water on about day 6 of GI bought number 2. I guess I am now the next generation to doubt the safety of Italian tap water. It has not produced a miracle cure for poor Aidan, unfortunately.

I’ve avoided infectious illnesses thus far and only need to battled the nasty Italian mosquitos. They are vicious and have a particular prediliction for biting faces so I’m not looking too pretty either. Bill, as always, has experienced no maladies of any kind. Even the mosquitos feast on me at night while he sleeps unperturbed. I swear his body functions with the precision of a Swiss time piece. Meanwhile, I seem to have a body more akin to the cheap knock off you get from a NYC street vendor. At least one of us is going to live to a ripe old age.

Hot, Hot, Hot

In mid July, we started breaking heat records here in Perugia. We were creeping into the mid 30s (mid to high 90s) daily with very little relief at night. To take advantage of the cooling benefits of evaporation, I started taking my daily shower at night before bed. Ever since I developed Raynaud’s phenomenon 11 years ago, I have not voluntarily taken so much as a lukewarm shower. Here I found myself flirtering with the cold spigot. After the shower, I would lay on top of the sheets and try not to move a single muscle lest I generate heat of any kind. Not a whole lot of sleep was happening and things were getting desperate. So we opted for a change of venue: an air conditioned hotel by the Adriatic Sea.

Three short train rides later we were in Rimini. You can learn alot about a culture’s priorities by watching where they focus their organizational energies. I didn’t find the French particularly organized. For example, they cannot form a line. But French gardens demonstrate a real tendency towards anal retentiveness. The Italians also aren’t going to win any awards for organizational prowess but they apparently take vacation very, very seriously. We arrived in Rimini and purchased our bus tickets. We were delighted to discover the bus stops are numbered. What an inspired idea! No guessing about where to get off (scendere, as they say here). Before long we were checked in, changed, and headed to the spiaggia. We were to go, specifically, to beach club number 81 otherwise known as “No problem.” Why it was called “no problem” rather than the Italian “No importa” is beyond me. They seem to have an affection for randomly using English and Americana. In another humours example, the restaurant next to our hotel was called the “James Brown Trattoria” and featured pictures of the King of Soul. It seemed so incredibly random and weird. As we approached the sand, we glanced right then left. Beach clubs lined the entire strand and all one could see was literally tens of thousands of beach chairs and umbrellas. You may not bring your own umbrella and you may not bring a towel. A sign on the beach said, “No towels. Pericolo morte.” [Danger of death] You will pay for sunshade, as they say. So we reported to the “bath master” as the sign instructed, paid for our sunshade, and joined the throngs of people frolicking in the sea.

I have to say, the beach clubs are impressive operations. They were reasonably priced: for 10 euros a day we had the use of an umbrella and two beach chairs. The umbrella was an absolute necessity as the heat can only be described as oppressive. It felt like North Carolina in August. We also had free access to a large children’s playground, babysitting, a bocci ball court, ping pong tables, and vollyball courts. Mind you it was too hot to move so we didn’t actually use any of these facilities but they were nice ideas in theory. There were also changing rooms, showers, and bathrooms. We had virtually everything we needed. In addition to all this formal infrastructure, people from various ethnic groups wandered the sand selling goods and services. Each ethnic groups seemed to have cornered a particular market. They were organized as follows:
• Massage services: Asian women
• Knock-off designer sunglasses, watches and bags and sometimes books: African men
• Cheap clothing, odd toys, and cold drinks: Indians
• Il Cocco (Coconut): exclusively Italians who wander the beach yelling “Il Cocco, Cocco Loco, Cocco Bello” raising their voices and drawing out the final “Oh” sound.
In addition to this odd assortment, I also saw some poor soul in a Barney-like costume walking with a fellow with a camera. Apparently they hoped to make their fortune snapping photos on the beach with the many kids. I thought the guy would die from heat stroke before the afternoon was through. The informal sector spilled out into the streets at night and, though somewhat curious and humorous, the air of desperation in all these people was a little hard to overlook. What a hard way to make a living.

We enjoyed our long weekend at the beach. The kids loved playing in the sand, which oddly few Italian children seem to do, riding paddle boats (with slides) in the sea, and swimming in the warm water. I also enjoyed a rare opportunity to be not only Raynaud’s free but so hot that I could only bear to wear a tank top. I hadn’t been that hot since, well, the last time I was in Italy .... Every night on the news they reported on the weather around the country. Florence was topping out at 44! They started showing people cooking pasta in the ocean, apparently the Italian equivilant of frying an egg on the sidewalk. Going to the beach had clearly been a good call.

The other unanticipated benefit of the trip was the food. We paid for a half board and took our breakfast and dinner at the hotel every evening. Each night there was an extensive buffet of antipasti. This coincided nicely with my being on steroids and gave me ample opportunity to satisfy my new and improved appetite. I ate so much that I looked three months pregnant at the end of every meal. In addition to the buffet, we had a choice of four “primi piatti” and “secondi piatti” each night. And pizza was not on the menu. This forced Amelia to eat something other than pizza at a restaurant. She rose to the occasion and discovered that she really loves turkey, chicken, mussles, and clams. Aidan, as always, ate only pasta every night.

Saturday, August 16, 2008

More Italy ...

Did anyone try the link to the photos? If so, did it work?

High Maintenance

I readily admit that I can be fairly high maintenance when it comes to food. I will complain ad naseum about the bagels in North Carolina, fast food, or other things that offend my culinary senses. It’s not that I need to have the finest – after all, I like jelly beans – I’m just particular. Here I am completely befuddled by the ubiquitous self-service restaurants. These are restaurants that have food at the ready and you just take what you want. Sort of like a cafeteria but a lot more common. I’m not really bothered by the salads and such, but I’m completely grossed out by ready made sandwiches. “Oh, yes, please give me a soggy tuna sandwich that has been sitting out since 9 this morning. A good case of food poisoning is just what this trip needs to spice it up.” I don’t think so. Bill was ready to kill me in Florence because I kept refusing to get food at one of these places and everyone was starving. Finally, I caved in. It wasn’t as awful as I imagined but it wasn’t good either.

The next day I noticed that the Lonely Planet guide had highlighted a place that made sandwiches to order. I dragged us through Florence in search of said establishment. When we turned the corner of the street there were about 30 people either in line or crouched on the sidewalk eating sandwiches. I got in the queue while Bill took the kids to the bathroom (this was the day Aidan was sick with a GI bug and, let me tell you, that is not a good thing on a European vacation). The place was literally a 7 feet high, 4 feet wide, 2.5 feet deep hole in the wall. The back wall was lined with wine bottles, a small cash register was in the left hand corner, and the right hand corner was filled with all the necessities for making 23 different kinds of sandwiches. Soon it was my turn and I have never been so happy to order a sandwich in my entire life. For 10 euros I got four sandwiches made in less than 2 minutes. It was impressive. I found a spot on the sidewalk and waited for Bill to return with the kids. They returned, cleaned their hands with hand sanitizer ( a must-have on these trips), and we gorged ourselves. The experience made this food snob’s day. Even if I had to eat on a dirty sidewalk filled with pigeons.

Which brings me to my next observation. What do people have against sitting down and eating? Many of the bars and self-service places charge you a different price if you sit down to eat. Few people seem to be willing to pay for this so everyone just stands around crowding the place and leaving the tables empty. The ice cream place we go to has about 20 tables. I have never seen more than four of them filled but everyone stands around eating next to the tables. I don’t understand why this is a preferred outcome.

And my last burning question is what is the deal with tap water? The only restaurant we have been to that served tap water was in Lucca, where they actually have fountains all over the city where the locals fill up their water bottles. Elsewhere we have had to pay for bottled water. Is the tap water not potable? Is this just a money making scam? No one has water from a soda fountain and I have yet to see a water fountain (bubbler for you Wisconsinites). And ice is virtually non-existent. I asked for ice at one restaurant and the waitress brought me a bowl with 5 cubes in it and a spoon. I guess we were supposed to share the cubes among us.

Itsy Bitsy Teeny Weenie

The first few trips to the pool I was too cold to get in the water with the kids so one day I left my suit at home. When we arrived, I discovered that the retractable roof was open, leaving the pool area gloriously warm. “Damn,” I thought, “I wish I had brought my suit.” After 40 minutes of watching the kids I decided to see how much the suits cost at the front desk. Much to my surprise the price was reasonable. I asked for a size 36, erroneously assuming the Italians used the same sizing system as the French, and was told the smallest size was a 40. The staff person took the suit out of its Ziploc sized bag and showed it to me. It was slightly bigger than Amelia’s current suit. I had already noticed that Italian women have a different standard for backside bikini coverage then we do in the US so I wasn’t really surprised. Not only do they wear these suits, they actually swim laps and do water aerobics in them and I have yet to see a boob fall out of the tiny tops. “What the hell,” I figured, “I might as well blend in.” So I took my bikini in its little sandwich-sized bag to the locker room and changed. Fortunately, my daily energy expenditures here have resulted in considerable weight loss so I could squeeze my butt into the bottoms. I could just imagine the stares this little number was going to generate at Duke’s Faculty club come August. When I came out to the pool deck Amelia cooed, “Mommy I like that suit.” “Good thing,” I thought, “because you’ll be wearing it next year.”

Yesterday I was at the pool and I noticed two women wearing really modest bathing suits. You do see women wearing them here but they are generally the T-back racing variety. But these suits screamed “American woman” as loud as The Guess Who. Sure enough as they got within earshot I heard the familiar sounds of American English. We stand out in so many ways.

It’s not just the women who like their tiny little suits. The men are also like to show it all off. God those Speedo’s leave nothing to the imagination. And every once in a while a man will stick his hand in his suit and rearrange himself right there on the pool deck. I’m getting used to them though and I have to admit that there are some fine looking men at the pool so I’m not really going to complain too much. I’ve even learned to overlook the dorky swimcaps that we are all required to wear.

Try it, you’ll like it

Anyone who has ever experienced a meal with Aidan knows that he is the ulitmate picky eater. Minus a few green vegetables and fruit, everything Aidan eats is beige. He has yet to meet a complex carbohydrate that he doesn’t like but he shuns meat in all its forms with the exception of bacon and chicken nuggets (and who knows if chicken nuggets are actually meat). Not only does he have a narrow range, he absolutely refuses to try anything new. All this, combined with he fact that the child is perpetually in motion, has made it impossible for him to gain any weight. He is the only 6 year old I know who has not graduated to a booster seat because he has yet to reach 40 pounds.

On this trip he has tried two new things: prosciutto sandwiches and meatballs. I think the prosciutto sandwich sampling occurred out of extreme hunger and he will only eat them if there is one thin slice of meat (my mother is going to love this because that was the only way that I would eat sandwiches as a child). But the meatball attempt is a slightly more involved story ...

On our first night in Venice we went to a restaurant recommended in the Lonely Planet book. I noticed that meatballs were listed in the appetizer section and asked Aidan if he wanted to try one. To my surprise he agreed. When the waiter brought the meatballs I noticed that they had been coated in breadcrumbs and deep-fried. This was as close as we were going to get to a chicken nugget in Italy. Aidan bit into one and actually decided that he liked them. I noticed that the meat was a little pink but Amelia eat nearly raw beef all the time in France so I didn’t stop him. Aidan devoured two huge meatballs and asked for another serving. All in all he ate nearly four of them. On our way back to the hotel Aidan said his stomach hurt. Aidan is always complaining about one malady or another so I blew him off. Back at the hotel Aidan happily climbed into bed with me, a treat I had promised him earlier in the day. We turned off the lights and settled in for some much needed sleep.

Our room had a “view” of a small canal. Mind you, it was only a view if I literally stuck my head and shoulders all the way out the window and looked down. Mostly I had a view of the next building. The unadvertised consequence of a canal view, however, was the sound of boats racing through the canal with their radios blaring well into the wee hours. When I finally fell asleep it was well past midnight.

About 2 am I heard the sounds of retching. I needed to act fast lest I spend the rest of the night sleeping in a vomit covered bed. Aidan was on the other side of the bed and I couldn’t reach him. “Bill, get him to the bathroom” I yelled to wake up my other half. Bill grabbed Aidan and raced to the bathroom but didn’t quite make it. The poor little guy proceeded to puke for quite a while then fell asleep on the cold hard floor. When he woke the next morning he cuddled up to me, “I don’t think I should have eaten those meatballs,” he observed. “I guess not buddy,” I answered. I think we can safely assume that Aidan has had his last culinary adventure for a long while.

In contrast to Aidan, Amelia will try anything and is virtually obsessed with eating. When she was an infant, the staff at her daycare nicknamed her “Meals on Wheels” because she loved to eat so much. And she is still deserving of the moniker. So far she has tried everything from anchovies to octopus. In fact she’s driving us a little crazy, “What are we eating?”, “Where are we eating?”, “Can I have gelato?”, “When are we going out for gelato?”, “What time is our reservation?” and on and on.